autonomic
 

Hello. Has anyone autonomic neuropathy? When did it started after first symptoms started?

I have that, the first symptoms started about a year and a half after I first noticed a numb spot on my right foot. My bladder barely works now and I have constipation even though I gorge on fiber and liquids.

Yes, my autunomic problems started many years before the sensory symptoms.

Thanks. And what tests are there for autonomic? Can you die from autonomic?

My autonomic neuropathy was one of my first major problems.

There are many tests for autonomic dysfunction...all depending on what your symptoms are (which you don't mention). Tilt table will determine whether there are any POTS or orthostatic hypotension affecting your heart rate or BP. There is also 24 hour BP monitoring as well as holter monitors for heart rate.

If you have GI problems, then gastric empty study is available.

There is QSART and skin biopsy to check for general autonomic fiber damage and/or sweat dysfunction.

Sure, you can die from autonomic neuropathy, but it all depends on your level of autonomic failure, the cause, symptoms, and tolerance for medications. But most people can find ways to manage their autonomic dysfunction with medication, life-style changes, etc.

Frankly at my age dying from it sounds better than living with it.

It's really quite manageable. I have severe autonomic dysfunction and have adjusted to medications, life-style changes and simply learning to live with a different level of function than most other people.

If your constipation is from autonomic dysfunction, than you should focus on motility, not just fiber and water. Domperidone can help and they now find that Mestinon (for myasthenia gravis) can be helpful for GI autonomic problems.

Urinary symptoms are a bit harder to treat...have you seen a specialist in neurogenic bladder for help with this?

I avoid specialists as a general rule and I'm better off for it IMO. My GP has been better than all of them put together. So no, I've seen a urologist to consider options and that's all. That's all I'll likely do as the urologist was a rare exception and was open and honest IMO. He basically said if it's a neurogenic bladder then there isn't much to be done other than self catheter. He told me he'd advise strongly against the permanent ones.

I seem to be still hanging in with the digestive issues by eating a basically raw food diet with lots of OG sprout salads. Constipation is still intermittent but thank you for the suggestions. I'll check them out and present them to my GP for consideration.

My first autonomic symptoms started a year before the major sensory ones. I would have random times of vertigo, orthostatic hypertension which just kept getting worse, palpitations, agitations, confusion, and an electrical surge feeling just as I was falling asleep. I started noticing that my muscles wouldn't recover from work outs and I became weaker and had some random numb spots in legs and tingling in left foot and in my hands when elevated. It took a year for all this to develop into full body and face sensory pain and symptoms.

Thanks to all. No, I do not have autonomic, I hope. I am very scared of getting it ... I have just palpitations in stressfull situations, but they say it is normal. I had numbers of ecgs, echoes, gastro and renal function ok, I did not have the tilt table test. My major problem is tingling all over body ... and vibration/buzzing sensation. My new symptom is like stabbing with a needle in my legs and arms but especially in my left arm.

My autonomic symptoms seem to have come and gone over the past two or three years. Originally misdiagnosed obviously. A bout with subjective vertigo and orthostatic hypotension a few years back. Most recently after the small fiber pain really ramped up and i got a confirmed diagnosis I found the postural hypotension and vertigo like sensations are more permanent and less random. :(. i also have an elevated TSH level and thyroid nodules with "mild" hashimoto's. Hoping there will be a simple fix like mididrone and the symptoms won't worsen. Autonomic symptoms are tougher to deal with in my opinion because they really limit your quality of life if it can't be remedied. Pain is one thing, but when you can't go out and do things with your family and friends it really stinks on ice.

You may consider reading up on diets specifically for gastroparesis (delayed emptying), which is the GI dysfunction most common to occur with autonomic neuropathy. As they urge patients to avoid raw veggies, fruit, salads, etc because they are extremely hard to digest in the raw state...same with other raw foods in some cases. Also with gastroparesis, fiber doesn't usually get absorbed properly (as other nutrients too), so maybe that's why you don't see any benefit of it, and still have the constipation. Just a thought or two, to help you get on track to feeling better. Lots of good info out there for life-style and especially diet modifications to help in this area of GI autonomic problems...without having to see a specialist.

You are correct that neruogenic bladder is difficult to treat, but other autonomic conditions (affecting BP, heart rate, GI) have many treatment options.

Thanks for all that, one reason I do the sprout salads is that they are much easier to digest then the mature plant.

Hi icelander

Do you have access to kiwifruit to include in your diet? - over here (NZ) it's a well known natural laxative and is often recommended by doctors for seniors with constipation issues.

Only in season here and I limit fruit (I love prunes and figs) for blood sugar reasons.

It's not always a problem and when it is pretty bad I fix it with an enema.

I have found over and over again with many issues that the docs want to medicate, that I can find a fix of sorts using natural methods.

Hello. And what symptoms come with autonomic concernong heart only? Fast heart rate, feeling of anxiety or pressing on chest?

Every day I wonder if my comdition has worsened to now include autonomic function problems. My doctors have termed my pain condition a central sensitization but don't seem to fully understand that I feel sick almost all the time. After a meal my body goes into a 'funk" where my whole body vibrates and I feel gross. How do you explain that to a doctor without sounding nuts? I'm also having hot flashes and flushes all the time.... Not anything like menopause. I feel nauseous and ill when they occur. I've been through menopause and am all too familiar with that type of sudden flush; but this includes my palms and feet and seems to jack up the burning I have in them. I've been from pillar to post with doctors and have given up hope that they will ever be able to do anything for me but write a RX. Maybe that's why I vent here. Thx!

I understand just how you feel. I have interstitial cystitis which is a bladder disease and right after I found out I had IC I was in a serious car wreck and had to have surgery. Right after that I started having symptoms of neuropathy. I've been to 12 different Drs. It has been a nightmare! Over a year now and just 2 months ago finally an SFN diagnosis. I'm sure I have something autonomic going on too. I eat and the muscles in my upper and and back go nuts. Especially if I'm constipated......which I am a lot! I also have not been able to sleep. I HAVE to take Lunesta to get 5 hours of sleep. It's been crazy. My left arm and leg just don't work right and shake like crazy at times. I have a lot of trouble walking. I'm so tired of no answers. I've had every test there is. (Brain scan, 2Cat scans gasric emptying colonoscopy endoscopy pelvic floor therapy dry needling ...etc)Seeing my 3rd neuro doc October 14. Not getting my hopes up. Thx Kate